Notice
- Important: This guidance is under active development by NHS England and content may be added or updated on a regular basis.
- This Implementation Guide is currently in Draft and SHOULD NOT be used for development or active implementation without express direction from the NHS England Genomics Unit.
Consent
Consent-RoD-PheobeSmitham-Example
Example of a Consent resource where the Consultee Declaration form has been filled, as described in the Clinical Scenario: Duo Trio Testing. Capturing of consent within the Genomic Medicine Service, outside of Record of Discussion forms, is still under review within the NHS England Genomic Unit.
Consent |
id : Consent-RoD-PheobeSmitham-Example |
status : active |
scope |
coding |
system : http://terminology.hl7.org/CodeSystem/consentscope |
code : research |
display : Research |
category |
coding |
system : http://terminology.hl7.org/CodeSystem/consentcategorycodes |
code : research |
display : Research Information Access |
patient |
reference : Patient/Patient-PheobeSmitham-Example |
source |
reference : QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamCDForn-Example |
policy |
authority : https://www.england.nhs.uk |
uri : https://www.england.nhs.uk/wp-content/uploads/2021/09/nhs-genomic-medicine-service-genomic-consultee-declaration-1.pdf |
{ "resourceType": "Consent", "id": "Consent-RoD-PheobeSmitham-Example", "status": "active", "scope": { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", "code": "research", "display": "Research" } ] }, "category": [ { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", "code": "research", "display": "Research Information Access" } ] } ], "patient": { "reference": "Patient/Patient-PheobeSmitham-Example" }, "sourceReference": { "reference": "QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamCDForn-Example" }, "policy": [ { "authority": "https://www.england.nhs.uk", "uri": "https://www.england.nhs.uk/wp-content/uploads/2021/09/nhs-genomic-medicine-service-genomic-consultee-declaration-1.pdf" } ] }
<Consent xmlns="http://hl7.org/fhir"> <id value="Consent-RoD-PheobeSmitham-Example" /> <status value="active" /> <scope> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentscope" /> <code value="research" /> <display value="Research" /> </coding> </scope> <category> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentcategorycodes" /> <code value="research" /> <display value="Research Information Access" /> </coding> </category> <patient> <reference value="Patient/Patient-PheobeSmitham-Example" /> </patient> <sourceReference> <reference value="QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamCDForn-Example" /> </sourceReference> <policy> <authority value="https://www.england.nhs.uk" /> <uri value="https://www.england.nhs.uk/wp-content/uploads/2021/09/nhs-genomic-medicine-service-genomic-consultee-declaration-1.pdf" /> </policy> </Consent>
Consent-RoD-PheobeSmithamFather-Example
Example of a Consent resource where the Record of Discussion form has been filled, as described in the Clinical Scenario: Duo Trio Testing. Capturing of consent within the Genomic Medicine Service, outside of Record of Discussion forms, is still under review within the NHS England Genomic Unit.
Consent |
id : Consent-RoD-PheobeSmithamFather-Example |
status : active |
scope |
coding |
system : http://terminology.hl7.org/CodeSystem/consentscope |
code : research |
display : Research |
category |
coding |
system : http://terminology.hl7.org/CodeSystem/consentcategorycodes |
code : research |
display : Research Information Access |
patient |
reference : Patient/Patient-PheobeSmithamFather-Example |
source |
reference : QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamFather-Example |
policy |
authority : https://www.england.nhs.uk |
uri : https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form |
{ "resourceType": "Consent", "id": "Consent-RoD-PheobeSmithamFather-Example", "status": "active", "scope": { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", "code": "research", "display": "Research" } ] }, "category": [ { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", "code": "research", "display": "Research Information Access" } ] } ], "patient": { "reference": "Patient/Patient-PheobeSmithamFather-Example" }, "sourceReference": { "reference": "QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamFather-Example" }, "policy": [ { "authority": "https://www.england.nhs.uk", "uri": "https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form" } ] }
<Consent xmlns="http://hl7.org/fhir"> <id value="Consent-RoD-PheobeSmithamFather-Example" /> <status value="active" /> <scope> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentscope" /> <code value="research" /> <display value="Research" /> </coding> </scope> <category> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentcategorycodes" /> <code value="research" /> <display value="Research Information Access" /> </coding> </category> <patient> <reference value="Patient/Patient-PheobeSmithamFather-Example" /> </patient> <sourceReference> <reference value="QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamFather-Example" /> </sourceReference> <policy> <authority value="https://www.england.nhs.uk" /> <uri value="https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form" /> </policy> </Consent>
Consent-RoD-PheobeSmithamMother-Example
Example of a Consent resource where the Record of Discussion form has been filled, as described in the Clinical Scenario: Duo Trio Testing. Capturing of consent within the Genomic Medicine Service, outside of Record of Discussion forms, is still under review within the NHS England Genomic Unit.
Consent |
id : Consent-RoD-PheobeSmithamMother-Example |
status : active |
scope |
coding |
system : http://terminology.hl7.org/CodeSystem/consentscope |
code : research |
display : Research |
category |
coding |
system : http://terminology.hl7.org/CodeSystem/consentcategorycodes |
code : research |
display : Research Information Access |
patient |
reference : Patient/Patient-PheobeSmithamMother-Example |
source |
reference : QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamMother-Example |
policy |
authority : https://www.england.nhs.uk |
uri : https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form |
{ "resourceType": "Consent", "id": "Consent-RoD-PheobeSmithamMother-Example", "status": "active", "scope": { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", "code": "research", "display": "Research" } ] }, "category": [ { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", "code": "research", "display": "Research Information Access" } ] } ], "patient": { "reference": "Patient/Patient-PheobeSmithamMother-Example" }, "sourceReference": { "reference": "QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamMother-Example" }, "policy": [ { "authority": "https://www.england.nhs.uk", "uri": "https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form" } ] }
<Consent xmlns="http://hl7.org/fhir"> <id value="Consent-RoD-PheobeSmithamMother-Example" /> <status value="active" /> <scope> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentscope" /> <code value="research" /> <display value="Research" /> </coding> </scope> <category> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentcategorycodes" /> <code value="research" /> <display value="Research Information Access" /> </coding> </category> <patient> <reference value="Patient/Patient-PheobeSmithamMother-Example" /> </patient> <sourceReference> <reference value="QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamMother-Example" /> </sourceReference> <policy> <authority value="https://www.england.nhs.uk" /> <uri value="https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form" /> </policy> </Consent>
Consent-RoD-PheobeSmithamYoungPersonAssentForm-Example
Example of a Consent resource where the Young Person Assent form has been filled, as described in the Clinical Scenario: Duo Trio Testing. Capturing of consent within the Genomic Medicine Service, outside of Record of Discussion forms, is still under review within the NHS England Genomic Unit.
Consent |
id : Consent-RoD-PheobeSmithamYoungPersonAssentForm-Example |
status : active |
scope |
coding |
system : http://terminology.hl7.org/CodeSystem/consentscope |
code : research |
display : Research |
category |
coding |
system : http://terminology.hl7.org/CodeSystem/consentcategorycodes |
code : research |
display : Research Information Access |
patient |
reference : Patient/Patient-PheobeSmitham-Example |
source |
reference : QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamYPAForm-Example |
policy |
authority : https://www.england.nhs.uk |
uri : https://www.england.nhs.uk/wp-content/uploads/2021/09/nhs-genomic-medicine-service-young-persons-assent-form.pdf |
{ "resourceType": "Consent", "id": "Consent-RoD-PheobeSmithamYoungPersonAssentForm-Example", "status": "active", "scope": { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", "code": "research", "display": "Research" } ] }, "category": [ { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", "code": "research", "display": "Research Information Access" } ] } ], "patient": { "reference": "Patient/Patient-PheobeSmitham-Example" }, "sourceReference": { "reference": "QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamYPAForm-Example" }, "policy": [ { "authority": "https://www.england.nhs.uk", "uri": "https://www.england.nhs.uk/wp-content/uploads/2021/09/nhs-genomic-medicine-service-young-persons-assent-form.pdf" } ] }
<Consent xmlns="http://hl7.org/fhir"> <id value="Consent-RoD-PheobeSmithamYoungPersonAssentForm-Example" /> <status value="active" /> <scope> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentscope" /> <code value="research" /> <display value="Research" /> </coding> </scope> <category> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentcategorycodes" /> <code value="research" /> <display value="Research Information Access" /> </coding> </category> <patient> <reference value="Patient/Patient-PheobeSmitham-Example" /> </patient> <sourceReference> <reference value="QuestionnaireResponse/QuestionnaireResponse-RoD-PheobeSmithamYPAForm-Example" /> </sourceReference> <policy> <authority value="https://www.england.nhs.uk" /> <uri value="https://www.england.nhs.uk/wp-content/uploads/2021/09/nhs-genomic-medicine-service-young-persons-assent-form.pdf" /> </policy> </Consent>
Consent-RoDYoungPersonAssentFormAvailable-Example
Example of a Consent resource where the Young Person Assent form has been filled, as described in the Clinical Scenario: Direct to Lab. Capturing of consent within the Genomic Medicine Service, outside of Record of Discussion forms, is still under review within the NHS England Genomic Unit.
Consent |
id : Consent-RoDYoungPersonAssentFormAvailable-Example |
status : active |
scope |
coding |
system : http://terminology.hl7.org/CodeSystem/consentscope |
code : research |
display : Research |
category |
coding |
system : http://terminology.hl7.org/CodeSystem/consentcategorycodes |
code : research |
display : Research Information Access |
patient |
reference : Patient/Patient-PheobeSmitham-Example |
source |
reference : QuestionnaireResponse/QuestionnaireResponse-RoD-YoungPersonAssentForm-Example |
policy |
authority : https://www.england.nhs.uk |
uri : https://www.england.nhs.uk/wp-content/uploads/2021/09/nhs-genomic-medicine-service-young-persons-assent-form.pdf |
{ "resourceType": "Consent", "id": "Consent-RoDYoungPersonAssentFormAvailable-Example", "status": "active", "scope": { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", "code": "research", "display": "Research" } ] }, "category": [ { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", "code": "research", "display": "Research Information Access" } ] } ], "patient": { "reference": "Patient/Patient-PheobeSmitham-Example" }, "sourceReference": { "reference": "QuestionnaireResponse/QuestionnaireResponse-RoD-YoungPersonAssentForm-Example" }, "policy": [ { "authority": "https://www.england.nhs.uk", "uri": "https://www.england.nhs.uk/wp-content/uploads/2021/09/nhs-genomic-medicine-service-young-persons-assent-form.pdf" } ] }
<Consent xmlns="http://hl7.org/fhir"> <id value="Consent-RoDYoungPersonAssentFormAvailable-Example" /> <status value="active" /> <scope> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentscope" /> <code value="research" /> <display value="Research" /> </coding> </scope> <category> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentcategorycodes" /> <code value="research" /> <display value="Research Information Access" /> </coding> </category> <patient> <reference value="Patient/Patient-PheobeSmitham-Example" /> </patient> <sourceReference> <reference value="QuestionnaireResponse/QuestionnaireResponse-RoD-YoungPersonAssentForm-Example" /> </sourceReference> <policy> <authority value="https://www.england.nhs.uk" /> <uri value="https://www.england.nhs.uk/wp-content/uploads/2021/09/nhs-genomic-medicine-service-young-persons-assent-form.pdf" /> </policy> </Consent>
Consent-RoDAvailable-Example
Example of a Consent resource referencing a Record of Discussion form, as described in the Clinical Scenario: WGS Test Request - Rare Disease. Capturing of consent within the Genomic Medicine Service, outside of Record of Discussion forms, is still under review within the NHS England Genomic Unit.
Consent |
id : Consent-RoDAvailable-Example |
status : active |
scope |
coding |
system : http://terminology.hl7.org/CodeSystem/consentscope |
code : research |
display : Research |
category |
coding |
system : http://terminology.hl7.org/CodeSystem/consentcategorycodes |
code : research |
display : Research Information Access |
source |
reference : QuestionnaireResponse/QuestionnaireResponse-RoD-Example |
policy |
authority : https://www.england.nhs.uk |
uri : https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form |
{ "resourceType": "Consent", "id": "Consent-RoDAvailable-Example", "status": "active", "scope": { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", "code": "research", "display": "Research" } ] }, "category": [ { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", "code": "research", "display": "Research Information Access" } ] } ], "sourceReference": { "reference": "QuestionnaireResponse/QuestionnaireResponse-RoD-Example" }, "policy": [ { "authority": "https://www.england.nhs.uk", "uri": "https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form" } ] }
<Consent xmlns="http://hl7.org/fhir"> <id value="Consent-RoDAvailable-Example" /> <status value="active" /> <scope> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentscope" /> <code value="research" /> <display value="Research" /> </coding> </scope> <category> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentcategorycodes" /> <code value="research" /> <display value="Research Information Access" /> </coding> </category> <sourceReference> <reference value="QuestionnaireResponse/QuestionnaireResponse-RoD-Example" /> </sourceReference> <policy> <authority value="https://www.england.nhs.uk" /> <uri value="https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form" /> </policy> </Consent>
Consent-RoDToFollow-Example
Example of a Consent resource where the Record of Discussion form has not been filled, as described in the Clinical Scenario: WGS Test Request - Rare Disease. Capturing of consent within the Genomic Medicine Service, outside of Record of Discussion forms, is still under review within the NHS England Genomic Unit.
Consent |
id : Consent-RoDToFollow-Example |
status : proposed |
scope |
coding |
system : http://terminology.hl7.org/CodeSystem/consentscope |
code : research |
display : Research |
category |
coding |
system : http://terminology.hl7.org/CodeSystem/consentcategorycodes |
code : research |
display : Research Information Access |
policy |
authority : https://www.england.nhs.uk |
uri : https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form |
{ "resourceType": "Consent", "id": "Consent-RoDToFollow-Example", "status": "proposed", "scope": { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", "code": "research", "display": "Research" } ] }, "category": [ { "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", "code": "research", "display": "Research Information Access" } ] } ], "policy": [ { "authority": "https://www.england.nhs.uk", "uri": "https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form" } ] }
<Consent xmlns="http://hl7.org/fhir"> <id value="Consent-RoDToFollow-Example" /> <status value="proposed" /> <scope> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentscope" /> <code value="research" /> <display value="Research" /> </coding> </scope> <category> <coding> <system value="http://terminology.hl7.org/CodeSystem/consentcategorycodes" /> <code value="research" /> <display value="Research Information Access" /> </coding> </category> <policy> <authority value="https://www.england.nhs.uk" /> <uri value="https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form" /> </policy> </Consent>